Second Appointment Coming Up

I am a little apprehensive about this visit to Dr. St. Amand.  I don't really know if I have had any clearing yet.  I have had a couple of events that I thought "THIS IS IT!"  After reading his book three times, I was expecting pain that might have been unbearable.  When I was last there, he told me that because the osteoarthritis is so painful, that it is sometimes hard to the fibro.  I am inclined to agree with that.  I have had quite a bit of pain in my upper and lower jaw and in my ears.  My ears have been hard as a rock for years.  A doctor once told me "If your ears are that hard, just imagine what must be going on inside."  Nice, huh?  I have often wondered why my ears are so hard.  When I get a haircut from a new stylist, it is always fun to see her wince as she tries to move my ears.  The pain I have had since being on guai is arthritis type pain in my ears and down the sides of my neck.    I have also had quite a bit of pain in my left hip and my left thigh.  I think that is a good thing.  I am taking a big suitcase with me so I can bring home sal free products from the pharmacy.  I haven't used lotion or deodorant for two weeks and I am about to blow away from dryness.  I am excited about my life and my future.  I am determined to participate fully and enjoy myself.  The pain will have to step aside!

Problem last post

I don't know what happened on that last post.  Maybe it is the drugs.  Ya think?  Anyway, I couldn't get all the words to stay together as you can see.  I tried everything.  I didn't want to delete the post because it took me so long to get it done.  My daughter, Dana, called and said the last paragraph was also missing  So...here it is.

One thing I should note is I have had a little extra energy since being on the guai. I still only have about four good hours each day but I am able to get quite a bit done in those hours. I am grateful for that! I am grateful for
answered prayers. I am grateful for my very supporting family. They are all as excited about the possibility of my 
improvement as I am. Thank you family!

I must confess

I'm sorry that it has taken me so long to write on my blog.  I have kept wondering why it is so difficult to write on this blog.  I have tried for so many years to ignore the pain and accompanying suffering.  I have really never shared my illness in any depth to anyone, on a very personal basis, other than my husband Larry.  My children have a pretty good idea but they don't live with it like Larry does.  A couple of my closest friends found out I was going to California to see Dr. St. Amand.  They asked my husband what was going on.  They had no idea that I was in pain 24/7.  Hopefully that is good because I have never wanted to hang this on my friends nor my family.

Also, another reason I haven't posted on my blog is I felt I needed to tell anyone that read this what Dr. St. Amand's treatment is.  It is so simple but yet complicated.  So.....I have decided that if someone wants to know all the details, they can go to his website or buy his book.  As for me, right now, I am mostly concerned with my progress in healing.

When on Dr. St. Amand's treatment, guaifenesin, it is expected that within a time, the fibro pain will worsen up to 6 to 8 times worse than normal.  That pain is a sign that your body is dumping extra phosphate out of your cells.  I have been on the treatment 18 days.  The osteoarthritis pain in my hands aand feet has been much worse.. Other than a couple of fairly nasty days I haven't had any extreme pain. Today, while putting things away, I got hit with a pain in my hip that ran down into my thigh that almost put me down. I, at first, got a little panic but then the light came on. I might be cycling out the phosphates today. Whoo Hoo! I can take it! I can take it!

I emailed Dr St. Amand's nurse this week with a list of my personal products to see why I wasn't having extra pain. I found out I was blocking for 11 days by using Cetaphil lotion which has a plant oil in it. (Most plant products in personal products will block the guaifenesin) She told me not to worry that I wasn't feeling extra pain. When I see Dr. St. Amand on February 26, his mapping of me will tell the real truth. He will be able to tell if my body is clearing out by the amount and feel of the fibro lumps. I can't wait!

One thing I should note is I have had a little extra energy since being on the guai. I still only have about four good hours each day but I am able to get quite a bit done in those hours. I am grateful for that! I am grateful for answered prayers. I am grateful for my very supporting family. They are all as excited about the possibility of my improvement as I am. Thank you family!

Quote from Dr. St. Amand's site

If you have fibromyalgia you are ill.
You are NOT crazy. 
"You may have been told that whatever you have is untreatable or that your symptoms are all in your head. People think you're a hypochondriac and doctors may not want to handle your case. Or you may have been overmedicated by well-intentioned health care providers who wanted desperately to help you. You may be having trouble getting refills for medications that make your life tolerable. You may be in danger of losing your job and your relationships. You may have fallen victim to those who are making billions of dollars a year off those desperately searching for something, anything, that will help..."

Arrival

How will you know that you've arrived if you don't know where you are headed?

Fear of revealing the truth

I have tried to post several times since my first post.  I have written them and then cancelled them.  As I tried to write, I found myself afraid to post.  What am I afraid of?  I spoke to my sister, Vicki, and my daughter, Dana, and shared how I was afraid.  In considering some of my fears, I realize that I am pretty private about my pain and suffering.  I have tried not to burden my family and friends with my daily aches and pains.  I remember several years ago I called each of my four grown children on the telephone and told them how much I loved and appreciated their care and concern but......I asked them to please not ask me how I felt anymore because this was my disease and I didn't want it to be their burden.  Of course, being the good people they are, of course they still cared and worried.  I just didn't want it to be a topic of our conversations.  Maybe I thought if I didn't acknowledge it, it would go away.  So....after speaking to my sister and my daughter, they both told me that I need to be brutally honest on this blog if I truly wanted to help others, as well as myself.  So, here goes, here I come.  

First day of the rest of my life!

     Well....here goes.  Today, February 1, 2010,  I started on Dr. R. Paul St. Amand's protocol for Fibromyalgia.  I have been dealing with this stuff for over fifty years....ya think.  A friend of my daughter, Paula, gave us the info about this protocol about a month ago.  My daughter got so excited to see that her friend Paula had success with her fibro that she ran out and bought the book the very next morning for me.  I am on my third reading.  I just returned from my first appointment, January 29, 2010, with Dr. St. Amand in Marina Del Rey.  I, for the first time in my fibro life, feel that this is really the first day of the rest of my life.  I flew to see him and asked my sis Vicki to go with me to keep notes and possibly record my appointment.  By the way, they had no problem with her doing either of those.  I can't say I was nervous for the appointment but I was VERY APPREHENSIVE.  I felt that all that I had read on the support group messages might be too good to be true.  And....who was this doctor who really cared if I got better or not?  I cannot express in human words how very impressed I was with the care I received from him.  He was thorough with his exam and took the time to explain the protocol as if I was the first patient he had ever seen.  When we came out of the appointment, my sister kept on saying how she couldn't believe the care I had just received by this compassionate man.  I agreed.
     I decided to create this blog for two reasons.  First, I wanted to keep a journal of my experience and second, I am hoping that my experiences may help someone out there with this painful disease.  I will be noting my ups and downs so as I make improvements, small or big, I will be able to see in print where I am and where I am going.